scholarly journals To disclose, or not to disclose? Perspectives of clinical genomics professionals toward returning incidental findings from genomic research

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Isamme AlFayyad ◽  
Mohamad Al-Tannir ◽  
Amani Abu-Shaheen ◽  
Saleh AlGhamdi
Keyword(s):  
Incidental Findings ◽  
Descriptive Analysis ◽  
Genetic Research ◽  
Genomic Research ◽  
Research Subjects ◽  
Clinical Genomics ◽  
Positive Attitudes ◽  
Risk Of Disease ◽  
Study Participants ◽  
Clinical Genomic

Abstract Background Clinical genomic professionals are increasingly facing decisions about returning incidental findings (IFs) from genetic research. Although previous studies have shown that research participants are interested in receiving IFs, yet there has been an argument about the extent of researcher obligation to return IFs. We aimed in this study to explore the perspectives of clinical genomics professionals toward returning incidental findings from genomic research. Methods We conducted a national survey of a sample (n = 113) of clinical genomic professionals using a convenient sampling. A self-administered questionnaire was used to explore their attitudes toward disclosure of IFs, their perception of the duties to return IFs and identifying the barriers for disclosure of IFs. A descriptive analysis was employed to describe participants' responses. Results Sixty-five (57.5%) respondents had faced IFs in their practice and 31 (27.4%) were not comfortable in discussing IFs with their research subjects. Less than one-third of the respondents reported the availability of guidelines governing IFs. The majority 84 (80%) and 69 (62.7%) of the study participants indicated they would return the IFs if the risk of disease threat ≥ 50% and 6–49%, respectively and 36 (31.9%) reported they have no obligation to return IFs. Conclusion Clinical genomics professionals have positive attitudes and perceptions toward the returning IFs from genomic research, yet some revealed no duty to do so. Detailed guidelines must be established to provide insights into how genomics professionals should be handled IFs.

scholarly journals The preferences of potential stakeholders in psychiatric genomic research regarding consent procedures and information delivery

2019 ◽  
Vol 55 ◽  
pp. 29-35 ◽  
Author(s):  
Anna Sundby ◽  
Merete Watt Boolsen ◽  
Kristoffer Sølvsten Burgdorf ◽  
Henrik Ullum ◽  
Thomas Folkmann Hansen ◽  
...  
Keyword(s):  
Informed Consent ◽  
Incidental Findings ◽  
Genetic Research ◽  
Genomic Research ◽  
Research Subjects ◽  
Cross Sectional ◽  
Telephone Consultation ◽  
Active Involvement ◽  
Consent Procedure ◽  
To Receive

AbstractBackground:Genomic sequencing plays an increasing role in genetic research, also in psychiatry. This raises challenges concerning the validity and type of the informed consent and the return of incidental findings. However, no solution currently exists on the best way to obtain the informed consent and deliver findings to research subjects.Aims:This study aims to explore the attitudes among potential stakeholders in psychiatric genomic research toward the consenting procedure and the delivery of incidental findings.Methods:We developed a cross-sectional web-based survey among five groups of stakeholders. A total of 2637 stakeholders responded: 241 persons with a mental disorder, 671 relatives, 1623 blood donors, 74 psychiatrists, and 28 clinical geneticists.Results:The stakeholders wanted active involvement as 92.7% preferred a specific consent and 85.1% wanted to receive information through a dynamic consent procedure. The majority of stakeholders preferred to receive genomic information related to serious or life-threatening health conditions through direct contact (69.5%) with a health professional, i.e. face-to-face consultation or telephone consultation (82.4%). Persons with mental disorders and relatives did not differ in their attitudes from the other stakeholder groups.Conclusion:The findings illustrate that the stakeholders want to be more actively involved and consider consent as a reciprocal transaction between the involved subjects and the researchers in the project. The results highlight the importance of collaboration between researchers and clinical geneticists as the latter are trained, through their education and clinical experience, to return and explain genomic data to patients, relatives, and research subjects.

scholarly journals Attitudes Regarding Enrollment in a Genetic Research Project: An Informed Consent Simulation Study Comparing Views of People With Depression, Diabetes, and Neither Condition

2019 ◽  
Vol 14 (4) ◽  
pp. 328-337
Author(s):  
Jane Paik Kim ◽  
Katie Ryan ◽  
Laura Weiss Roberts
Keyword(s):  
Informed Consent ◽  
Genetic Research ◽  
Research Process ◽  
Informed Consent Process ◽  
Consent Process ◽  
Psychosocial Risks ◽  
Positive Attitudes ◽  
History Of ◽  
Study Participants ◽  
History Of Depression

In this study, participants with a self-reported history of depression, diabetes, or no illness underwent a simulated informed consent process for a hypothetical genetic study related to depression or diabetes. Participants completed a survey assessing their perceived understanding of the research process, perceptions of its risks and benefits, their satisfaction with the informed consent process, and their readiness to make a hypothetical enrollment decision. All participants indicated strong readiness to make an enrollment decision regarding the research characterized in the simulation. Participants reported understanding the consent process relatively well and being generally satisfied with it. Greater concerns were expressed regarding psychosocial risks than biological risks for genetic studies on mental disorders. Our study documented positive attitudes toward volunteering for research that involved the collection of genetic data.

PENERAPAN STRATEGI CONTEXTUAL TEACHING AND LEARNING (CTL)UNTUK MENINGKATKAN HASIL BELAJAR IPS SISWA KELAS VSD NEGERI 010 SILIKUAN HULU KECAMATAN UKUI

2016 ◽  
Vol 5 (2) ◽  
pp. 320
Author(s):  
Siwi Enggar Makarti
Keyword(s):  
Learning Outcomes ◽  
Primary Schools ◽  
Teaching And Learning ◽  
Descriptive Analysis ◽  
Analytical Techniques ◽  
Research Subjects ◽  
Student Activities ◽  
Student Activity ◽  
Average Value ◽  
Contextual Teaching

The background of this study is the low learning outcomes IPS. It is characterized by the acquisition of the average value of social studies students at 59.10 with the percentage of students learning completeness amounted to 50.00% from 20 students. This research is a classroom action research (PTK) which aims to improve student learning outcomes through the implementation of strategies IPS Contextual Teaching and Learning (CTL). This study was conducted in 010 primary schools Silikuan Ukui Hulu subdistrict, with research subjects fifth grade students with a number of 20 students. This study was conducted by two cycles. The data used in this study are the activities of teachers, student activities, and learning outcomes are collected using the observation technique teacher and student activities and written tests, while the analytical techniques used in this research is descriptive analysis. The study states that the acquisition of the activities of teachers and students and learning outcomes in each cycle has increased. This is supported by: (1) the percentage of activity the teachers in the first cycle of the first meeting by 45%, in the first cycle of meetings II percentage teacher activity by 52%, the percentage of teacher activity in the second cycle of the first meeting by 65%, the percentage of teacher activity in the second cycle meeting II by 75%; (2) the percentage of student activity in the first cycle of the first meeting by 49%, in the first cycle of meetings II percentage of student activity by 60%, the percentage of the activity of students in the second cycle the first meeting by 63%, the percentage of student activity on the second cycle of meeting II by 79% ; (3) learning outcomes in basic score of 59,10.Dan which reached KKM 65 only 10 students or (50%). The first cycle of the average value obtained by the students reached 63.6. Students who achieve KKM there are 13 students or 65 (65%). Cycle II average value obtained students achieve value above 67 means the KKM. Students who reached the last 16 students or (80%).

PENINGKATAN KOMPETENSI GURU DALAM PERENCANAAN PENILAIAN AUTENTIK DENGAN BIMBINGAN KELOMPOK DI SMPN 011 MANDA

2019 ◽  
Vol 3 (3) ◽  
Author(s):  
Maisuherni Maisuherni
Keyword(s):  
High School ◽  
Junior High School ◽  
Junior High ◽  
Descriptive Analysis ◽  
Teacher Competence ◽  
Research Subjects ◽  
Junior High School Teachers ◽  
Average Value ◽  
Authentic Assessments ◽  
Group Guidance

This study aims to improve teacher competence in planning authentic assessments with group guidance. The research method used is classroom action research. The research subjects were 10 teachers at Mandau 011 Junior High School. The timing of the research is carried out in two cycles starting on Monday 11 February to Saturday 23 February 2019. Analysis of the data used is qualitative in the form of data reduction, data presentation, and data inference. While for quantitative data descriptive analysis is carried out by calculating the average value and percentage. The results of the study indicate an increase in the competency of 011 Mandau Junior High School teachers in planning authentic assessments with group guidance. there is a cycle I of the average teacher competence of 70,6 with sufficient categories. The average teacher competency in the second cycle is 76,3 which is included in the good category. Classically, as many as 90% of teachers have been able to plan authentic assessments properly.

scholarly journals Automatic Placement of Genomic Research Results in Medical Records: Do Researchers Have a Duty? Should Participants Have a Choice?

2015 ◽  
Vol 43 (4) ◽  
pp. 827-842
Author(s):  
Anya E.R. Prince ◽  
John M. Conley ◽  
Arlene M. Davis ◽  
Gabriel Lázaro-Muñoz ◽  
R. Jean Cadigan
Keyword(s):  
Medical Record ◽  
Medical Records ◽  
Genomic Research ◽  
Research Results ◽  
Research Participants ◽  
Difficult Question ◽  
Automatic Placement ◽  
Study Participants ◽  
Research Studies

The growing practice of returning individual results to research participants has revealed a variety of interpretations of the multiple and sometimes conflicting duties that researchers may owe to participants. One particularly difficult question is the nature and extent of a researcher’s duty to facilitate a participant’s follow-up clinical care by placing research results in the participant’s medical record. The question is especially difficult in the context of genomic research. Some recent genomic research studies — enrolling patients as participants — boldly address the question with protocols dictating that researchers place research results directly into study participants’ existing medical records, without participant consent. Such privileging of researcher judgment over participant choice may be motivated by a desire to discharge a duty that researchers perceive themselves as owing to participants. However, the underlying ethical, professional, legal, and regulatory duties that would compel or justify this action have not been fully explored.

scholarly journals Assessing the Knowledge, Attitudes and Practices of COVID-19 among Quarantine Hotel Workers in China

Healthcare ◽  
2021 ◽  
Vol 9 (6) ◽  
pp. 772
Author(s):  
Yi-Man Teng ◽  
Kun-Shan Wu ◽  
Wen-Cheng Wang ◽  
Dan Xu
Keyword(s):  
Descriptive Analysis ◽  
Binary Logistic Regression ◽  
Sociodemographic Factors ◽  
Cross Sectional Survey ◽  
Chi Square ◽  
Cross Sectional ◽  
Attitudes And Practices ◽  
Positive Attitudes ◽  
Hotel Workers ◽  
Knowledge Attitudes And Practices

During the pandemic, quarantine hotel workers face a higher risk of infection while they host quarantine guests from overseas. This study’s aim is to gain an understanding of the knowledge, attitudes, and practices (KAP) of quarantine hotel workers in China. A total of 170 participants took part in a cross-sectional survey to assess the KAP of quarantine hotel workers in China, during the COVID-19 pandemic. The chi-square test, independent t-test, one-way analysis of variance (ANOVA), descriptive analysis, and binary logistic regression were used to examine the sociodemographic factors associated with KAP levels during the COVID-19 pandemic. The results show that 62.41% have good knowledge, 94.7% have a positive attitude towards COVID-19, but only 78.2% have good practices. Most quarantine hotel workers (95.3%) are confident that COVID-19 will be successfully controlled and that China is handling the COVID-19 crisis well (98.8%). Most quarantine hotel workers are also taking personal precautions, such as avoiding crowds (80.6%) and wearing facemasks (97.6%). The results evidence that quarantine hotel workers in China have acquired the necessary knowledge, positive attitudes and proactive practices in response to the COVID-19 pandemic. The results of this study can provide a reference for quarantine hotel workers and their targeted education and intervention.

scholarly journals Domestic violence and coping strategies among married adults during lockdown due to Coronavirus disease (COVID-19) pandemic in India: a cross-sectional study

2021 ◽  
pp. 1-29
Author(s):  
Priyanka Sharma ◽  
Anita Khokhar
Keyword(s):  
Domestic Violence ◽  
Coping Strategies ◽  
Descriptive Analysis ◽  
Cross Sectional Study ◽  
Systematic Research ◽  
Sectional Study ◽  
Cross Sectional ◽  
Frontline Workers ◽  
And Coping ◽  
Study Participants

Abstract Background: There has been a reported increase in cases of domestic violence during the coronavirus disease (COVID-19) pandemic, however systematic research data is still unavailable. This study was conducted to find out domestic violence prevalence and coping strategies among married adults during lockdown due to COVID-19 in India. Methodology: A cross-sectional study was conducted among married men and women in the month of April 2020. Data regarding socio-demographic profile, domestic violence and coping strategies employed during lockdown was collected thorough google forms. 97.9% forms were completely filled by the respondents. Descriptive analysis was done. Results: Out of 94 study participants, about 7.4% (n=7) had faced domestic violence during lockdown. Out of these 7 participants, about 85.7% (n=6) reported increased frequency of domestic violence during lockdown. About half of the victims chose to ignore it (57.1%, n=4) or used yoga/meditation (42.9%, n=3) to cope. Conclusion: With about 7.4% study participants facing domestic violence during lockdown, it is necessary to study its detailed epidemiology in pandemics so that interventions like helpline numbers, screening of patients during tele-consultation, etc. which can be delivered even during lockdown with the help of healthcare and frontline workers could be devised to address this problem.

scholarly journals A Descriptive Analysis of Transitions from Smoking to Electronic Nicotine Delivery System (ENDS) Use: A Daily Diary Investigation

2021 ◽  
Vol 18 (12) ◽  
pp. 6301
Author(s):  
Tamlin S. Conner ◽  
Jiaxu Zeng ◽  
Mei-Ling Blank ◽  
Vicky He ◽  
Janet Hoek
Keyword(s):  
Delivery System ◽  
Descriptive Analysis ◽  
Daily Diary ◽  
Extended Period ◽  
Dual Use ◽  
Quit Attempt ◽  
Quit Smoking ◽  
Nicotine Delivery ◽  
Study Participants ◽  
Tobacco Usage

Objectives: We aimed to examine patterns in smoking and electronic nicotine delivery system (ENDS) use over an extended period of time (up to 20 weeks) in people who smoked and who had never previously made a successful quit attempt using an ENDS. Design and setting: We conducted a longitudinal mixed-methods study in Dunedin, New Zealand, during 2018 and 2019. Participants: Purposively selected participants (N = 45; age (≥18 years), gender, ethnicities, cigarettes/day) who wished to quit smoking. Interventions: Participants were provided with a second-generation ENDS device (vape pen or starter “tank” device) at the start of their quit attempt, and asked to complete smartphone-based daily diary surveys assessing smoking and ENDS use. Outcome measures: Sunburst plots and a sequence plot were used to describe weekly and daily patterns of smoking and ENDS use (smoking only, ENDS use only, dual use, abstinent). Results: The most frequently reported movements among participants, classified according to their study week behaviour, occurred between dual use and exclusive ENDS use (and vice versa). A smaller group reported moving from dual use to exclusive smoking (and often back to dual use), and a small number reported moving between abstinence and different ENDS and smoked tobacco usage behaviours. Data visualisations focussing on those participants who had provided data during each of weeks 9–12 indicate that only a minority reported sustained dual use; instead, most participants indicated varied smoked tobacco and ENDS use, which included periods of dual use. Conclusions: The considerable variety observed within and between study participants suggests that high variability is typical rather than exceptional. Transitions from smoking to ENDS use may involve considerable periods of dual use, which is likely to be dynamic and potentially sustained over several months.

Moral cosmopolitanism, civic action and ethical consumption: Social differences in young Australians’ global citizenship

2021 ◽  
pp. 144078332110538
Author(s):  
Quentin Maire
Keyword(s):  
Sociological Theory ◽  
Global Citizenship ◽  
Descriptive Analysis ◽  
Statistical Modelling ◽  
Ethical Consumption ◽  
Future Research ◽  
Social Differences ◽  
Theory Of Practice ◽  
Positive Attitudes ◽  
Citizenship Identity

The relationship between global citizenship identity and actions remains an unsettled issue. In this article we use the PISA 2018 survey to explore whether global citizenship identity is associated with a greater likelihood of engaging in ‘globally minded’ practices among young Australians. Descriptive analysis reveals that self-reported global citizenship identity is associated with higher levels of moral cosmopolitanism, more so than with greater intercultural values or with more positive attitudes to immigrants. However, this self-declared identity does not necessarily translate into cosmopolitan action. Statistical modelling shows that, in the Australian context, global citizenship knowledge, values and identity account for a limited proportion of differences in self-reported cosmopolitan action. We argue that a sociological theory of practice helps explain these results. We conclude by highlighting future research opportunities to better understand the social determinants of global citizenship practices, including by exploring out-of-school socialisation and a broader range of cosmopolitan practices.

Ethical challenges of whole genome sequencing in translational research and answers by the EURAT-project

2015 ◽  
Vol 38 (4) ◽  
Author(s):  
Eva C. Winkler ◽  
Christoph Schickhardt
Keyword(s):  
Translational Research ◽  
Whole Genome Sequencing ◽  
Genome Sequencing ◽  
Incidental Findings ◽  
Whole Genome ◽  
Ethical Challenges ◽  
Research Subjects ◽  
Translation Research ◽  
Legal Questions ◽  
Legal Challenges

Abstract:The use of whole genome sequencing in translational research not only holds promise for finding new targeted therapies but also raises several ethical and legal questions. The four main ethical and legal challenges are as follows: (1) the handling of additional or incidental findings stemming from whole genome sequencing in research contexts; (2) the compatibility and balancing of data protection and research that is based on broad data sharing; (3) the responsibility of researchers, particularly of non-physician researchers, working in the field of genome sequencing; and (4) the process of informing and asking patients or research subjects for informed consent to the sequencing of their genome. In this paper, first, these four challenges are illustrated and, second, concrete solutions are proposed, as elaborated by the interdisciplinary Heidelberg EURAT project group, as guidelines for the use of genome sequencing in translation research and therapy in Heidelberg.

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